I was born with spina bifida, and I am lucky - I can walk. I can function. But for over half of my life, I've been dealing with bone defects and orthopedic issues.
When I was 22, I had a hiking accident, and fell. I had already been dealing with bone separation in my right foot for 3 years, but the fall did more damage. I went to the doctor to figure out what was wrong. Well, long story short, it turns out my father had canceled my health insurance without informing me. (I won't delve into my family issues, don't worry!)
Okay, I thought. Well, I'll insure myself. I was a student at the time, working on my B.A. in history at UAB. I got insured through my school. Except – not so fast. Now I had a pre-existing condition. Over the course of the next two years, I was hospitalized multiple times. I developed open sores on my foot because it was so misshapen, I was infected with MRSA and had to be hospitalized, and I lived every day in misery. I couldn't walk without being in agony. I gained over 100 pounds. I fell over a year behind on my degree because I often couldn't make it to class.
Two years later, my insurance company reevaluated my policy and finally figured out they were spending more on me than if they had just let me have the surgery I needed in the first place. So, I finally got to have it. 8 weeks in a wheelchair and a cast, 8 more weeks of an orthopedic walking cast. And the screws in my foot broke, the plate holding the bone together cracked, and the surgery failed. So, a year later, I did it all again, and the same. thing. happened.
Part of the explanation for this, of course, is that I had to wait so long to get it repaired. The bones were so deformed by that point that it was difficult to get a surgery to take. Also, my added weight didn't do me any favors. I knew I needed to lose the weight.
Incidentally, I’ll write here that I consider myself to be a relatively educated human. I have spent many years in school, I have studied history and social science, and I have had the fortune to have wonderful mentors and a great education. But I knew almost nothing about nutrition. I had only a basic understanding of what a calorie was, and what that meant for my health. My education in health science was sorely lacking.
So, I started reading about the science of nutrition, and developed an understanding of CICO (calories in, calories out) “dieting.” (I put dieting in quotes since I don’t believe in this; I’ve changed my food habits. Anything sustainable is a total lifestyle change, not a temporary diet.) I began to log everything I ate, sticking solely to a calorie goal. (Proper nutrition came later.) I used MyFitnessPal to do this. It was hard at first, mostly because I just wasn’t used to it. And it was slow. So slow. But weight loss is a marathon, not a sprint, and I kept at it. Reducing weight loss to a simple science did wonders for my mentality and my own personal sense of discipline. I had to eat fewer calories than I burned. That’s it. It’s that simple. It may not be easy – it never is – but it is that simple. It’s basic science. This process gave me a new appreciation for science and basic physics, and it legitimately, truly, changed my life.
Fast forward a couple years, and I work now as a teacher after having received my M.A degree. I've lost a total of 185 pounds. I work two part-time jobs, one as an adjunct history instructor, and one as an editor and assistant. Since I can’t receive health insurance through my employer, I got on the Affordable Care Act.
In December of 2016, just before I got on the ACA, I developed another infection in my right foot. I went to the ER. I now have another $1500 bill I can't pay. This is an important lesson in the current state of health care. I have heard politicians talk about the ER as an option for sick, uninsured people. That money that I can’t pay – it doesn’t just disappear into the ether. It is passed on to everyone, and costs rise. Believe me, I don’t want to be a medical charity case or a burden on society. I’d like to be able to pay that bill.
In the interest of not having to deal with this again, I opted to get insurance through Blue Cross. My deductible is low, because I knew that soon, I would need another surgery. But my out-of-pocket medical costs are still around $8,100 per year. What choice do I have? I pay $446 a month on a $1600 a month salary. I get a little side income (around $500 a month) from my editing job. My husband and I split this between two people, since he is currently unemployed, albeit actively looking. It's hard, of course. Living below the poverty line is harder work than most people realize. We must pinch every penny, and we very rarely go out. But we manage. We are alive.
That infection that I went to the ER for, though it didn't show up in X-rays at the time, spread to the bone. Last month, I had to have my toe amputated to, in my surgeon’s words, save my foot. Luckily, this time, I had insurance. I'm feeling much better now, and my activity level is back to normal.
However, I am still in pain. Every day. I don't take anything for it but nerve pain medication (I know a toe is just a toe, and not comparable to people who have suffered far worse amputations, but phantom limb pain still makes my whole leg hurt). Another shout-out to medical science is needed, though, because without this medicine, I would be in absolute misery. All of my (remaining) toes are dislocated. The issue with the screws and the metal plates still exists. The bones are still separated. I make do, but it is difficult.
And there's the crux of the matter. If I lose my health care, I probably won't die. If I get another infection, I'll go to the ER. Some people will die. In fact, a lot of people will die. And I do not know how to explain to people that they need to care about what happens to others, because, and this is important: even if you are healthy right now, you probably will not always be. When I was younger, I too thought I was invincible. I wasn't. Now, I am 32, and it often feels as though the entirety of my twenties was wasted being in pain and miserable. But at least I am alive.
This was obviously a very personal story for me to share, and while I recognize it is tangentially related to science, medicine and medical advancements should be an issue we all care about. We must care about it. People are suffering. Without medical advancements, I never would have been able to have any surgical care at all. I very likely would have lost my entire foot. Without the surgery I had as an infant to correct my spina bifida, I would very likely be paralyzed. I am lucky that I have only had the side effects and symptoms that I have outlined here; it could have been much, much worse, and it is much worse for many people. The power of science and medicine in our lives must not be ignored, and the free and uncensored distribution of scientific data is vital to our continued survival. This is also profoundly true of scientific education; if we neglect to nurture another generation of doctors, researchers, and scientists, society will collapse under its own ignorance.
My own science story is why I support the March for Science, but it is only a part of the broader human story. We all need science, and it is my hope that my personal experience helps to remind people why.